In this guest post, Amanda Kasper reviews a book about finding humor in the journey with chronic illness, and the surprising benefits associated.
Visit Amanda on her inspiring blog, & this, I believe.
Four hours ago, I sat down with the book “How can you NOT Laugh at a Time Like This: Reclaim Your Health with Humor, Creativity and Grit” written by Carla Ulbrich. The book was recommended to me in the middle of July, and I of course promptly ordered it on Amazon, however, it sat on bookshelf until this morning. I can’t explain what led me to this book, amongst the 27 others in line waiting to be read, but looking back, I feel like it may have been fate. Because, you see, this book was exactly what I needed at this moment in time.
Carla was diagnosed with Lupus, a chronic illness, at age 25. After suffering from near kidney failure, two strokes, and other significant medical challenges, Carla embarked on ways in which she could find her humor, and her voice as a songwriter again. The book is composed of short chapters, funny and inspiring notes that serve as both a patient guide and a companion. I found myself folding down page corners and underlining sentences, scribbling notes in the margins and later, on a piece of loose-leaf paper.
Through her words of wisdom and personal anecdotes, Carla paints a picture of some experiences and moments that as chronic patients, we are all familiar with. fact, on page 2, Carla lists the top 10 things NOT to say to someone who has just been diagnosed, including her response to each. They’re just too good not to share, especially since I can only imagine how many times each of us have heard these.
10. I knew someone who had that. She died.
(Thanks for the boost of confidence!)
9. I knew someone who has that; he’s in perfect health condition.
(You can’t be in perfect health when you’ve been diagnosed with a serious illness)
8. Is that a form of cancer?
(Ask a doctor, or look it up on the internet. The appropriate response is not curiosity but compassion.)
7. Is that a form of AIDS?
(See comment 8, above.)
6. God is punishing you because you have a hidden sin in your life. Or: The devil is attacking you because you are doing God’s work.
(Mr. Wizard, Don Knotts, the founder of the Peace Corps, and two serial killers were all diagnosed with cancer. Disease is not doled out on a “who deserves this most?” basis.)
5. I’m sure it’s nothing. You’ll be fine.
(Great! I’ll cancel all of my doctor appointments.)
4. Is it genetic?
(If you’re not my twin, why does that matter right now?)
3. Have you tried [insert any form of alternative medicine you can think of here]?
(There’s time for problem solving later. Be a friend first.)
2. You don’t look sick.
(You don’t look insensitive. I guess appearances can be deceiving.)
1. Is it contagious?
(Yes! And you cant leave until I lick your face!)
To me, I found a friend in Carla – someone I could identify with, someone who although experienced different symptoms, had been through the ringer – of moments, of feelings, of frustrations, of ambitions, of fear, and of courage. After the list above, I found this quote incredibly eye opening:
“Even as we deal with much pain, fear, anxiety and uncertainty as patients, those around us are also dealing with a lot of emotions. It’s a shock to see someone you care about weak and helpless. Our friends and family feel helpless too, and afraid. People want to help, they just don’t know what to do. If we give people something to do or say, they won’t feel so helpless, and we won’t feel so neglected.”
I have to admit, I’m incredibly guilty of being unable to put into words or express to others exactly what I need or what would make me feel better or more comfortable at the moment (can you come over and watch a movie with me? will you bring a stuffed animal? I need some quiet time – if I don’t answer my phone, please don’t take it personally. I love you, thank you).
She had wonderful suggestions on empowering yourself as a patient – creating your own patient file including all test results, doctors notes, medication lists, journals or graphs on tracking symptoms or energy levels; examining the faces we wear – the one for the public, the one for the medical staff, and the one at home that is just us; books to read and movies to watch that offered her inspiration, or gratitude or validity; but most of all, she showed how it is truly possible to be a patient, to be scared and suffering, and yet, to not be alone, to not be powerless.
To anyone looking to find a companion, a laugh, and somethings you may never have thought about when it comes to being your own best advocate, I would without a doubt recommend “How Can You NOT Laugh at a Time Like This”.
Purchase How Can You NOT Laugh at a Time Like This? Reclaim Your Health with Humor, Creativity, and Grit on Amazon.com
Visit author Carla Ulbrich on her website, TheSingingPatient.com
Read more blogs by the talented Amanda Kasper on her blog & this, I believe